Lyme disease: ‘Public health time bomb’ in the Berkshires environment

Editor’s Note: Mary Beth Pfeiffer is a free-lance journalist and former award-winning investigative reporter for the Poughkeepsie Journal. Her book: “Lyme: The First Epidemic of Climate Change,” was published April 17. Densmore interviewed Pfeiffer in February at a Lenox restaurant. Densmore was treated more than a decade ago for Lyme disease.

A public-health time bomb, seen as a result of climate change, could so profoundly change the way humans view outdoor recreation that the enjoyment and the economy of tick-infested regions like The Berkshires could suffer, a book being published this week suggests.

The time bomb is the spreading impact of the tiny black-legged tick, increasingly a carrier of Lyme and related diseases, which infected an estimated 380,000 Americans in 2015 alone. Lyme disease, caused by a blood-borne bacteria called Borrelia burgdorferi, is spreading rapidly around the globe as ticks move into warmer places and altitudes they could not survive before, says the book that was published on Tuesday (April 17).

“Lyme: The First Epidemic of Climate Change,” by award-winning author and investigative journalist Mary Beth Pfeiffer, describes how the spread of suburban subdivisions and hacked up forests has helped ticks multiply. She quotes multiple studies and researchers who document the spread of ticks slowly northward and to higher altitudes as the climate warms. “The reason for this rather sudden habitat expansion is pretty clear – the climate is warming,” she says.

Author and journalist Mary Beth Pfeiffer at lunch in Lenox, Mass., on February 2. Photo: William Densmore

The book tells of human tragedies — stories about families broken personally and financially by members with tick-borne diseases – and also a tale of festering dispute between two factions of American medicine over how to take care of them. The dispute sometimes leaves patients unsure of where to turn for trustworthy medical care.

The elements of the medical dispute center on these three questions:

Is common testing of Lyme disease accurate and thus reliable for diagnoses?

Does standard antibiotic therapy of one day or up to 28 days kill the Lyme bacteria?

Can the Lyme bacteria evade and thus survive antibiotics, causing systems to persist for months or years?

In her book, Pfeiffer presents evidence from all viewpoints, but her narrative sides with those who distrust the tests, seek more expansive – and expensive — therapies, and believe Lyme is a tragic long-term problem for thousands of victims. She argues government underfunding of Lyme research is a scandal and current treatment flawed.

Class-action lawsuit highlights dispute

The medical dispute has now landed in a federal court in Texas, where noted plaintiffs’ attorneys in November filed a class-action suit alleging a conspiracy by eight health insurers and at least seven prominent physicians to advocate and only pay for limited care. The argument poised to play out in court is this: Would a different regime have avoided extended suffering or even death by thousands of Lyme victims?

Classic “bulls-eye” surrounds tick bite on the back.

Lyme disease at its most benign causes a telltale bulls-eye rash around the bite to a human in 50 percent or fewer reported cases, say many U.S. treating physicians. It is often asymptomatic and missed. When the rash or other typical symptoms appear, testing followed by antibiotic treatment appears to short-circuit any complications, says one group of physicians.

But at its worst, says a significant contingent of other treating physicians and victims, testing is inaccurate or inconclusive and short-term antibiotics not always effective. They say unresolved Lyme and other tick-borne diseases can cause chronic pain, joint swelling, arthritis symptoms, persistent rashes, behavioral changes, so-called “brain fog” and speech troubles and in some rare cases life-threatening heart trouble.

Most U.S physicians subscribe to a dominant “camp” – and the controversy is so ingrained that both sides have spoken of “camps.” The dominant view is that says two-days’ treatment with an antibiotic such as doxycycline will kill the Lyme disease “spirochete” bacteria that a tick’s bite can deliver under a person’s skin. Only if the telltale bull’s-eye rash — or other symptoms — are present is a longer course of antibiotics required, they say.

But for many years, a smaller, well-organized group of respected doctors say clinical observation and research suggest such a short course of antibiotics does not always kill the Lyme disease’s Borrelia burgdorferis pirochete bacteria. They say it can move from the bloodstream into the nervous system and brain, wreaking havoc over time. This group argues in favor of at least 28 days of antibiotics when Lyme disease is diagnosed, and possibly other treatments, including medicinal herbs, careful diets and exercise and even visits to hyperbaric oxygen chambers.

In her book, Pfeiffer says one of the 300 scientific papers she read and unearthed reported that 21 researchers looking at 78 different studies of the CDC-recommended “two-tier” Lyme blood test reported “insufficient evidence to make inferences about the value of the tests for clinical practice.”

The controversies over test reliability and how much antibiotic therapy to prescribe, and when, are not as heated as a more fundamental argument over whether there is any such thing as “chronic” Lyme which can persist for months or years after a month or less of antibiotic treatment.

Medical controversy evident in Berkshires

The dispute is evident in the Berkshires, where doctors affiliated with Berkshire Medical Center (BMC) say they follow guidelines calling for one day (two pills) of initial treatment. They rely upon guidelines last updated in 2006 by the Infectious Diseases Society of America (IDSA) – the “dominant” doctor group — and once referenced by the authoritative U.S. Centers for Disease Control (CDC). However, since just after the Texas lawsuit, those guidelines are no longer linked from the CDC website, and an update of them is not due until October.

Berkshire Medical Center in Pittsfield, Mass.

Privately, some BMC-affiliated physicians have said they do not generally accept the idea of “chronic” Lyme, that patients who believe they have persistent Lyme may actually have other illnesses that mimic Lyme symptoms. However, the public view is more nuanced.

“Those of us who do not see ‘chronic Lyme’ as a frequent consequence of treated infection recognize that there are early and later stages of the disease including neurological, significant cardiac and arthritic complications,” says Dr. Paula J. Aucoin, the lead infectious-disease physician at BMC in Pittsfield. She continued, in an email exchange, “ ‘Early stage’ disease – usually diagnosed by rash or signs of infection like fever – responds to a 10- to 14-day course of treatment, according to clinical studies. Later-stage disease – depending on the extent of the disease – may require a four-week course of either oral or intravenous [antibiotic] therapy.”

Aucoin adds: “Within BMC’s practices, patients referred for ‘chronic symptoms of Lyme’ should expect a thorough history and exam as well as laboratory testing to exclude other causes of their symptoms as the frequency of Lyme disease producing this chronic illness is thought not to be as common as often presented.” She says: “Many controlled clinical trials have not demonstrated any clinical benefit to treatment beyond four weeks.”

There are physicians outside of BMC’s orbit – in Vermont, the Hudson and Connecticut river valleys, and possibly in the Berkshires – who follow alternate guidelines of the International Lyme and Associated Diseases Society (ILADS), the organized “other” Lyme physician group. These guidelines more often prescribe the 28-day course of antibiotics.

In July 2016, a law took effect in Massachusetts – over the veto of Gov. Charlie Baker – requiring insurers to cover even longer-term courses of antibiotic therapy to treat Lyme if “determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment.”

Data on Lyme disease frequency spotty

Finding accurate data on Lyme cases is another area of controversy, beyond general agreement that it is very common now in New England and spreading. A 2011 Massachusetts House of Representatives report called it a “public-health crisis” at that time. Doctors and test labs have to report a Lyme diagnosis to the state. But the CDC estimates that just 10 percent of cases of Lyme disease are reported. The state said there were 108 reported confirmed cases in 2016 among Berkshire County’s 129,288 residents. There were 84 reported confirmed cases in 2013.

Kenneth Mercure

Lyme disease is at epidemic levels in Berkshire County, says Kenneth Mercure, Pittsfield-based organizer of the nonprofit Berkshire Lyme Alliance, which formed in 2011 to help Lyme disease-suffering individuals and to conduct public education. It meets many months at the Berkshire Athenaeum for speakers and discussions.

​”W​hat should be an easily treated and manageable infection is being left to become a serious and even life-threatening public health crisiss,” says Mercure, who says he has Lyme disease. “Lyme disease is under-reported, often misdiagnosed as something else and frequently suggested to be ​’​all in your head​’​. ​”

Pfeiffer says that in her book research she read over 300 medical and research reports and journal articles on tick-borne diseases. She counted 34 papers that spoke about the over-diagnosis of Lyme disease and four studies about under-diagnosis. But she says the 34 papers were all reliant upon a single initial case study, which ILADS experts say was flawed and has never been authoritatively replicated.

Author intending to raise environmental alarm

Either way, as the public becomes more aware of Lyme and heeds warnings to avoid tall grass and wooded areas during warmer months, will there be an impact on tourist and outdoor industries?

“I wrote my book from the perspective of Lyme being the first epidemic of climate change for that reason,” Pfeiffer said during a February interview at a Lenox restaurant during a visit to the Kripalu Center. ‘It’s an environmental issue. It has changed our relationship to nature. I used to let my kids run around in a field with grass up to their thighs, roll around and have lots of fun. And now we have to look at a child in that situation and be fearful that some little critter is going to climb up the short sleeve or under the pant leg and create some really serious health problems.”

Pfeiffer’s book offers a three-step solution to what she sees as the environmental challenge of disease-carrying ticks:

Recognize the pain of what her interviews with experts say is tens, maybe hundreds of thousands of long-term, tick-borne disease sufferers.

Develop more reliable blood tests to detect Lyme and other diseases.

Dramatically increase federal support for efforts to reduce tick populations, or invent a vaccine that keeps ticks from biting humans or renders their saliva and bite harmless.

“Without this commitment,” she writes in the book, “we will live in a world in which nature is feared or, for the unschooled, dangerous.”

Federal spending comparisons

While at least three nonprofit organizations are funding medical experiments around Lyme, and one of them – lymedisease.org — is conducting an epidemiological study of 10,000 Lyme victims to document their symptoms, treatment and experiences, the level of federal support is minuscule compared with other public-health challenges, Pheiffer’s book documents:

For every HIV/AIDS case, the National Institutes of Health (NIH) distributed $57,960 in 2015. The per capita West Nile Virus allotment was $7,050. Lyme disease research grants amounted to $133 per Lyme case.

The NIH has spent about $40 million a year on mosquito-borne West Nile Virus, with 2,000 cases a year nationwide. It has spent $24 million a year since 2012 on Lyme disease funding, with nearly 400,000 cases in 2015 alone.

In 2016, the federal government appropriated $1.1 billion to fight the mosquito-borne Zika virus outbreak, and the CDC awarded $184 million in grants for Zika monitoring, prevention and research. In the same year, the CDC awarded $2.7 million to control Lyme disease – the second-leading infectious disease in America. That figure was less than 1 percent of the agency’s research awards that year.

Ninety-one infants were born in the United States with Zika-related birth defects through July of 2017, and eight more died in the uterus. Sixty-three American deaths were attributed to Lyme disease in 2014. About 300,000 to 400,000 people are infected annually, “with 10 to 20 percent of casualties developing long-lasting, recurrent complications.”

“This isn’t about which disease tops the other as a public-health calamity,” writes Pfeiffer. “It is about whether responses to each are proportional. Zika prompted panic and got attention. Lyme disease, by contrast, has long been so much background noise, acknowledged but minimized by public-health officials and the researchers they relied upon.”

Protecting against ticks – what to do

Doctors and public-health officials in the Berkshires and southern Vermont see enough tick bites and the disease they cause that they have available resources for how to minimize the risk of bites and infection. They agree with Pfeiffer that key points include:

Wear clothing that covers exposed skin

Pull socks over pant legs.

Avoid tall grass and wooded areas if possible.

Always carefully check your whole body each day you are outdoors

If you find a tick, remove it immediately trying not to squeeze it (which can release toxin)

Kill and save the tick in rubbing alcohol and contact your doctor for advice

A testing lab at UMass-Amherst – tickdiseases.org — will test a mailed-in tick for Lyme and other diseases with results in a few days.

Experts frequently also advise wearing shoes, socks and even clothing which has been treated with a laundered, or sprayed-on version of a common insecticide generically called permethrin. It is also used as a cream to treat head lice and comes in brands such as Elimite, Nix, Crème Rinse and Nix Complete.

“I’m not saying don’t go out in the field or walk on a trail,” Pfeiffer said in the interview. “You have to be very vigilant though in how you interact with nature. When you’re walking on a path, don’t brush up against the tall grasses, because that’s where the ticks are. They just climb them in the beginning of the day and they just wait for a passing mammal. It doesn’t matter if it is a deer or a mouse or a groundhog or whatever – or a human being. They’ll just latch on.”

She also calls permethrin “very, very effective.” Her view is it has been studied and found “innocuous” even though she acknowledges she has a personal aversion to insecticides and chemicals. She says she has concluded that tick-borne diseases are such a serious risk, especially to children, that she has rethought permethrin use for her own family.

Lyme affects everyone in Hudson Valley

Pheiffer says her persona odyssey into the controversies and challenges of tick-borne diseases started in 2012 because in the Hudson Valley her former newspaper employer, the Poughkeepsie [N.Y.]Journal, realized that nearly everyone’s life has been touched by Lyme in some way. And shortly after she began writing regularly about it, she had the first of two personal experiences with Lyme infection, both of which luckily resolved well. The paper also found the stories posted on its website drew thousands of reads locally and worldwide.

She said she had to learn the science, learn about persistent Lyme that she is now convinced survives antibiotic treatment, and what she calls three Lyme “myths” – that it is hard to get, easy to diagnose and easy to treat.

“Short of restoring balance to a wounded planet, there are two options to curb Lyme and tick-borne disease,” she writes in her book. “First, get rid of or, more practically, sharply reduce ticks. Second, stop them from infecting people. We are a long way from reaching either of those goals. It is a problem of will, not ability. Science has tackled bigger problems in less times.”

RELATED RESOURCES:

Speech by author Mary Beth Pfeiffer in San Ramon, Calif., April 7, 2018:

Ticks are a problem for Humans and their Pets. They have been a problem for thousands of years. People affected used to gather Natural Medicinals to rub on their skin or make teas. There is some evidence that the CBD Oils in Industrial Hemp which was grown in The Berkshires for hundreds of years is a worthy antidote to a Tick Bite. In 1938, Big Pharma and others convinced Congress to outlaw growing Hemp. The 2014 US Farm Bill allowed individual States to decide if growing Hemp again was for them. Around 30,000 Acres are expected to be cultivated in the U.S. in 2018. NY will have around 3,000 Acres and VT will have around 750 Acres. MA will have Zero! Last week I had a conversation with MA Ag Commissioner John Lebeaux about my growing Hemp Test Plots. One of our projects would be to test the values of Hemp CBD Oils against Tick Bites and their infections, etc. In NY, Gov. Cuomo has given $1 Million to the Univ. of Binghampton School of Pharmacy to report on the benefits of Hemp CBD Oils.
In my opinion, CBDs will show benefits as a preventative and as a solution to many of our Lyme Disease Sufferers.

I fully agree with Mary Beth Pfeiffer and cannot emphasize more seriously the danger of ignoring her advice. I’ve contracted Lime Disease 3 times and fortunately recovered from all 3 incidents with the appropriate antibiotics, a two week antibiotic regimen. Yale University, some 25 years ago, set up a clinical study on Block Island, R.I. where we summered for over a period of 32 years. Like Lyme, Ct. where the tick was first discovered in New England, Block Island being land locked with countless deer (over 500 on its 10 square miles) due to hunting restrictions was an ideal breeding ground. We Block Islanders were fortunate in having over a period of over two years, thanks to Yale’s medical department’s studies, the option of annual and free blood tests and antibiotics, if necessary.
As to Ms. Pfeiffer’s remarks regarding the more recently arrived global warming and as a consequence ticks moving north, I’m sure this may be so. However growing up on a farm in Pennsylvania back in the ’50’s and a decade later in Tyringham ticks were rampant with no less than half a dozen found every day on our dalmation which were carefully removed and dropped into a jar half filled with petrol. Global warming and ticks have been around for many decades.
MOST IMPORTANT we have two friends who, not realizing their bites were tick born, are both now bedridden, mentally incapacitated, unable to speak clearly, lack of balance so severe that stairs are too dangerous to climb or descend, and worst of all a continuous decline with no possibility of recovery. TAKE PFEIFFER’S ARTICLE VERY SERIOUSLY!

I got bit by a tick last summer, came down with Human Annapolis . I was told it was the lesser of the diseases . Suffered about 4 days, took the anti-biotic for a week . I was lucky…… I don’t know how or were I picked up the tick ! Lyme is a very big DEAL ! The medical community and the governments haven’t answered the cry ! All we have to do is ramp up the hype and say it effects children and pregnant women to ramp up the funding …… unfortunately !

Please don’t spray your property for ticks. Do not believe the spraying companies, which claim that the permethrin sprays won’t kill anything else: they are incorrect (and their financial motive is obvious). They kill our pollinators: honey bees, bumblebees, dragonflies, etc. Think about how hard it is to kill a hard-bodied tick, and then think how vulnerable the pollinators are. Handle the dreadful tick problem at a personal level. Spray clothes with permethrin, DEET, whatever. And check and re-check your body. Google the problem, or see http://www.pressherald.com/2016/01/03/the-pesticides-bifenthrin-and-permethrin-may-get-rid-of-ticks-but-at-what-cost/. You really don’t want to live in a world without pollinators.

I was diagnosed with Lyme disease in 2005. I was given antibiotics, which seemed to help. However, I still suffer from some of the symptoms, such as chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. The inability to walk right etc, are temporary and generally happen when I am really tired and have been working hard. I lost touch with reality.. Suspecting it was the medication I Went off the antibiotics (with the doctor’s knowledge) and started on Lyme disease natural herbal formula I ordered from Natural Herbal Gardens, December 18, 2017 after being on the herbs you recommended, i had a total recovery from Lyme disease with this natural herbal formula treatment. The chronic fatigue, joint pain has subsided. When I stumbled upon you guys, it was just pure instinct. And from that day on it has been one of the best decisions I’ve made in my life. The caring that goes into explaining what herbs work for whatever ails me is astounding. In today’s world where so many are after a quick buck, selling without care, Natural Herbal Garden’s staffs amplifies the difference. I’m a believer in karma, and for generations to come, this is a herbal store that will be leaving it’s footprint in this world. Visit NATURAL HERBAL GARDENS official web site www. naturalherbalgardens. com A world of thanks to The Natural Herbal Gardens!”

We welcome your comments and appreciate your respect for others. We kindly ask you to keep your comments as civil and focused as possible. If this is your first time leaving a comment on our website we will send you an email confirmation to validate your identity.